3) Severely flaking skin and thinning of skin especially of his elbows and knees;

4) Non-healing cuts, dotted rash;

5) Rashes and redness remained even with proper steroid application;

6) Itch/rashes were nowfull-bodyrather than just on face, elbows, and knees

as with original diagnosis;

7) Unable to get sound night’s sleep due to constant nightly scratching despite medication (he would finally fall asleep around 6am, only to have to be up by 830am to go to school!)

8) Unable to focus, concentrate;

9) Fatigue evidenced by decline in physical performance on and off baseball field, and

10) No amount of high or low potent steroids relieved the redness, rash, or itch.

No internet pictures of eczema looked like this. Then I came across Juliana’s face, blog, and ITSAN (International Topical Steroid Addiction* Network.) I read her blog and looked at her before and after pictures, and I was ecstatic and filled with hope.

Her before pictures mirrored Brian’s symptoms, though much worse, and her current healed state is incredible. She started with eczema and finished with Topical Steroid Addiction/Withdrawal. She started “the cure” in 2011, and is almost completely healed in 2014. ITSAN.org is a forum of fellow “red skinners,” many of whom started using topical steroids for eczema, and also had Brian’s and Juliana’s symptoms.

No, Brian’s condition wasn’t just eczema anymore. The solution had become the problem. On 10/06/13, we started “the cure” with Brian: total cold turkey cessation of all topical steroids. And the adventure began.

Last night, Brian fell asleep before 12am for the first time in months and actually slept until 2:30am before the 2:30-4am itch fest began.

He awoke with the tops of his feet itching unbearably. After an hour and a half of massage to the feet with coconut oil, acupressure, deep breathing, hot packs, ice packs, soothing music, and mama doing the scratching, he started screaming loudly, “Help me, mama! Help me!” What was I doing, baking cookies!?!?

Sleepy and frustrated, I’d about given up so all this heartless mama could say was, “Keep it down! Daddy’s trying to sleep!”

“Well so am I!” he shouted back.

We settled on praying, thanking God for the healing we knew was happening beyond the itch, and taking nice, deep, calming breaths. (The breathing was more for me than him, I think.) Then sleep and peace came at 4am. PTL!

If you or your child is battling eczema, you may be familiar with the following regimen. What we wouldn’t do to find relief for our son!

Eczema Diagnosis: PCP December 2004 @ 18 months old

Initial presentation: It started as a very thin, red line in right popliteal fossa (back of knee.) Initial treatment: Westcort & Elidel; aquaphor/eucerin; Benadryl/Claritin at night. Use thin layer of Topical Steroid (TS) until flare calms down, then use Elidel 1-2x/day.

Dermatologist: Started 6/22/2005. On 1/16/13, rx was mometasone 2x/day x 2wks, then triamcinolone: Triamcinolone, protopic, or elidel for armpits, groin, and neck; dermasmoothe on scalp; mometasone for body–come back in 2 months. Last office visit was 3/21/2013. On 11/25/13 I tried over the phone to discuss possibility of Brian’s spreading eczema/full body redness as a reaction to the steroids, but a written statement from dermatologist, read by an RN, stated it was not possible for Brian to have what Dr. Rapaport spoke about (topical steroid addiction/withdrawal) “because the steroids used were not that strong.” The nurse said “If he’s red all over, he needs to be on medication.”

5) B-dry moisture proofing and healthy home air purification and humidity control

6) No pets, minimal carpeting

7) Humidifier

8) Followed standard eczema protocol

9) Dust mite covers on all pillows, mattresses, and box spings

10) Use “Allergenie” setting on washer for bedding

11) Diet variations and eliminations

Brian’s skin got better for a little while, then it flared again. Over the years, the flareups lasted longer than the calm periods. He has had to take antibiotics about 3 x/year because of skin infections from the scratching. When he was in first grade, he was so dry, red, and itchy that he needed moisturizing 3x/day. He applied the second coating in the clinic during school and toughed out the questions and the stares as he walked his red, aquaphor-coated body back to class. My heart broke for him, and we desperately searched the internet for more effective treatments, relief for his misery, and answers as to why his eczema grew from a little red itch to a huge painful problem.

“I can do all things through Christ who strengthens me.” Philippians 4:13

Brian’s little patch of eczema grew to include:

incessant itching, spreading redness head to toe, burning, stinging, oozing, flaking, insomnia, and thin, broken skin. Through ITSAN, we found that his worsening condition appears to be stemming from the skin's addiction to the topical steroids used to treat the eczema. The cure: stop topical steroids completely; but the road to recovery is hell on earth. This blog shares our experiences so that as Brian eventually heals, others like him may have hope for healing, too.

DISCLAIMER:

Everything contained in this site is an account of personal experiences, and opinions are solely those of the author. The material contained herein does not constitute medical advice. If you have a medical concern, please contact your medical or healthcare practitioner.